Friday, June 18, 2010

Broadening your vocabulary: Has lupus helped?


This little lady doesn't look like she has a care in the world, does she? Well, most of the time, she doesn't. But if you were to ask her, she might look around for a few seconds, spot the boo-boo on her toe, and immediately launch into a baby-blabber dissertation on her recent "toe stubbing" - why and how she came to stub her toe, whether or not it's hurting at the moment, and she most certainly would brief you on how the stubbing incident has affected her since.
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I'm telling you - this toe has gotten way more attention than it deserves. It's like every time she finds herself for a loss of words (which isn't often), she'll grab her foot, show you her toe, and say, "toe", or any of the other dozen words related to the infamous stubbing.
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The good news is that her vocabulary has increased significantly since the incident. She's perfected words like, "foot", "boo-boo", and "medicine", which were already part of her repertoire, but are now permanent fixtures in her daily vocabulary. And words like "toe", "nail", "hurt", "bleed", "tight", (for the shoe that brushes up against her ailing toe), "ouch", "band-aid", "sandal", and "fast" (because running fast is how we stubbed the toe in the first place) have now been added to her list. Like I said, when she talks about her toe - she's still in blabber mode, but she throws in enough big girl, grown up words that you know exactly what she's talking about...which is, of course, the stubbed toe.
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So this little exercise has caused me to wonder if I, as a lupus patient, have expanded my vocabulary over the past 10 years. And the answer is undoubtedly, "yes." Words like "pleural effusion", "anticoagulant", "cutaneous", and "nephritis" never even crossed my mind before - and I certainly didn't think I'd ever need to understand what they meant.
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Even larger, more looming concepts like immobility, debilitation, and convalescence really didn't mean anything to me before lupus; I may have known the meanings of those words, but I certainly didn't realize the impact they could have on someone like me.
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I never even thought of issues like insurance coverage, 24-hour pharmacies, or our house's proximity to a hospital as "things to consider." Now, I do.
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And that doesn't include all of the medications, side-effects, symptoms, treatments, and therapies with which I'm now intimately familiar. "Corticosteroid" just rolls of the tongue, as does "alopecia", "serology", and a whole host of other terms that I use on a pretty regular basis.
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And I've witnessed this phenomenon in other people, too. My sister-in-law throws around words and concepts about gestation and premature birth conditions that I know she never knew before; a beloved babysitter of Deirdre's now knows more about dysautonomia and the autonomic nervous system than she ever thought she would, now that she's been diagnosed with POTS.
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Do they wish they didn't know what they do? Of course. Do I wish I wouldn't have such a personal and thorough understanding of what it means to live with lupus? Absolutely. But if this is the path that's been chosen for us, for reasons that, today, we may not understand, we might as well benefit from the experience.
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Three perfect examples of individuals becoming enlightened, informed, and educated about certain medical matters in ways they never thought possible. I tell you - I never thought I could have such an intelligent, articulate conversation with a doctor as I do today. Talking with pharmacists, technicians, and others in the medical profession comes so easily -primarily because I have the vocabulary to keep up.
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And believe it or not - matters like these DO make for good party conversation. More people than you think struggle to care for a chronically-ill parent, an ailing child, or deal with a rare, unknown medical condition that runs in the family. In my experience, those people are just so happy to find even one person who can begin to understand what it's like to deal with issues like these. To be faced with all of that lingo and medical jargon is overwhelming. And to be forced to make sense of it all can feel next to impossible.
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And that, of course, is all part of what it means to be living well, despite lupus. Not just physically, but emotionally and mentally, too.
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Am I a more educated and informed individual because of lupus? Absolutely.
Am I a more compassionate, considerate person because I have a chronic illness? I'd like to think so.
Am I a more emotionally mature and self-aware thirty-something because of my disease? Oh yeah.
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But is Deirdre a more patient, obedient, responsible 20-month old because she stubbed her toe? Uh...not so much.

4 comments:

Katie Rice said...

Deirdre looks especially cute in that picture. What a beautiful, smart little niece I have. I am so lucky.
Oh, and I meant to add that the post was great too. I just got sidetracked by Angel Baby. Kiss her toe for me, will you? :)

Sadaf Shaikh said...

I love this post. I wholeheartedly agree that living with a chronic illness has made me so much more empathetic to others' plight. I work in human resources and frequently handle disability claims (both work-related and non work-related). In the past, it was part of my nature to automatically assume that the employee was exagerating their condition. I can now relate to pretty much all the cases that come across my desk. Since I returned to work three months ago (after my 10-month hiatus) I've had numerous conversations with employees who are on disability leave or employees requesting accommodations due to an illness and I can TOTALLY relate to the helplessness they feel. I can sincerely tell them that I do understand what they're going through. A lot of people are afraid to talk about their "personal" situation at work. However, I've found that sharing my story with others makes me human and employees can really talk to me. As an HR advisor, and a representative of the company, they're relieved that at least someone in the company knows what they're going through.

I remember posting here once before about my decision to go back to work (instead of trying for baby #2). It was a personal decision that I was very apprehensive about (let's be honest here). Three months later, I truly believe I made the right choice. My experience with lupus has made me better at my job and I'm able to devote my off-work time to my darling 5 year-old ball of energy, without a shred of guilt.

Sara Gorman said...

Thanks, Aunt Katie! She'd rather have a kiss directly from KeKe, but I'll do my best to pinch hit.

Sara Gorman said...

And Sadaf...I'm SO glad you feel (and know) that your decision was the right one! That's the best feeling in the world - to know that a sacrifice you made in the past to accommodate the disease has paid off in the long run. That's really what makes it all worth it - at least to me. It certainly allows me to continue to make good, healthy decisions - and reminds me that sometimes the hard choices are the best ones.

And I couldn't think of a better person to be in an HR position! I, too, found that I became a much better manager once I'd been diagnosed. I'm sure your employees appreciate your empathy...and even if they don't show it, you can bet that they go home at night and talk about the fact that at least ONE person at work understands! As always - thanks for sharing.